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Can Lupus cause scalp sores that are open wounds that are very hard to get rid of then come right back.

By Anonymous October 13, 2011 - 7:16pm
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I get sore spots on my scalp and it gets inflamed then become open wounds that take a long time to heal even with a Deratologist injecting them with cortico steroids, topical medication , and antibiotics . I have Fibromyalgia and take Lyrica . I have a constant rash on legs , arms , feet . I cough alot I have chronic Bronchitis, that is treated with Advair 500/50 twice daily , singulair, Provental HFA. I am exhausted some days to the point of going to sleep anywhere , and still wake up feel pain an exhausted.I get sores on my ears that get pussy and bleed . I get sores on face that I take Acyclovir twice a day to try to keep them from coming back .I get Myobloc every 90 days in neck , trapezius , and between shoulder blades . I have severe uncontrolled migraines 5-6 times weekly . I have been to many Drs.in different towns .I have a lot of acid reflux with pain in in chest. Can you tell me if there is a test I could get a Dr. to do to find out . I also have a lot of stomach, bowel , and bladder problems .If there is any advice to talk to my Dr. about I would like to know .
Thank you Darcy

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EmpowHER Guest

I have all the same symptoms and am now diagnosed with autoimmune mixed connective tissue disease. I have had the sores on my head since July (5mo) and am on 35mg of prednisone to try- again - to get rid of them-they've kept coming back and worse every time. I run a low grade fever with them and feel awful. I had severe colitis - had to go to the emergency room- and the Rheumatologist thinks it's sores in my
gI tract- so I'm waiting to see a Gastroenterologist. I have not been able work since the hospital episode- just have no strength and am so exhausted mY Neurologist put me on narcolepsy meds (armodafinil) and it really helps! I have been on pain meds for the pain for 10 years since it all started. Originally, my old dermatologist thought I was crazy and tried to send me to the psychologist for scratching the sores myself!! Until the blood work finally showed auToimmune- I got that a lot. Watch out for the Lyrica- I gained 80 lbs on it and cannot get it off!! Thyroid low too- and lately I'm anemic as well. Things just seem to be getting worse- I hope this round of steroids will get rid of these awful sores! My new dermatologist is great- and they often can give you steroid cream and this steroid tape to help things heal. I really don't think they know which disease it is- just that it's autoimmune!! I feel sure they're going to try a biological next- but they scare me- as I'm a teacher, and around lots of germs and get infections every year- if I e dr get back to school! I am losing hope

October 30, 2016 - 12:43pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I too out on 80 pounds while taking Lyrica. Watch out for it. I was taking Cymbalta with it as well and continue to take Cymbalta. I was able to lose 65 pounds once I tapered off the Lyrica (which took me six months. Ugh! The withdrawal was horrible), and I believe this last 15 pounds is from the Cymbalta. It works very well for me, so I've decided to make friends with these 15 pounds because I think they will be around for a while.

October 16, 2017 - 9:30pm
EmpowHER Guest

I get that too, and I have SLE, low thyroid, and scleroderma I would never let a dermatologist inject anything into me, especially a corticosteroid. I avoid dermatologists. They have zero answers, and just leave scars. It's just chasing symptoms when you inject this or that area. Try eating an anti-inflammation diet and megadosing on vitamin D3. That clears mine up. Oh! Get some liposomal vitamin c also. You can find it on Amazon I am sure. You squeeze a small packet into your oranje juice (to hide the awful taste). High dosing vc will remodel the collagen, and heal all manner of skin issues. I'm an RN, and now a Nurse Practitioner Student. My background is plastic and reconstructive surgery. I am serious when I tell you to avoid dermatologists when possible. Head to a holistic nutritionist, a yoga class, and see a funny movie. That will do more to decrease skin flare issues than anything. Stress reduction and nutrition is the best. One last thing! Hormones. If your progesterone is low (like during your period), your hair will think, sores will appear on your scalp, and you will generally feel inflamed. I learned the hard way. Have your hormone levels checked, supplement with bioidentical hormones as needed, or grab some progesterone cream at the health food shop.

January 23, 2016 - 2:42pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you for your response! I can identify so well with this person. I need to see an rumatologist I am having lots of things happening with my body and want more answers. Thank you. [email protected]

September 17, 2017 - 12:35pm
EmpowHER Guest

This shit sucks in am going throw a lot and I have 8 kids can't spend anytime with them because I can't be in the sun are in the air I wish they find a cure it get depress sitting in the house all by myself and waiting on peoples to come see me I have to cover up head to toe and I am not feelings comfortable.

May 5, 2014 - 7:31pm
EmpowHER Guest

Have your doctor do a test for immune deficiency and multiple myeloma. I had all of your symptoms and after many doctors and research hospitals they found out that I have both of the above. i get an IGIV infusion once a month and other chemo treatments but am doing somewhat better how except for the horrible sores on my scalp. It seems problems never clear up and new ones start out of the blue, but at least I have an idea of why things are like they are. God bless you, Kayla

February 8, 2014 - 1:18pm
EmpowHER Guest

definitely! At age 10 i awoke with small scales on my scalp that quickly turned to ulcerations and did not respond to anything, and the pediatrician told my mother it was a scalp condition, No shampoos helped. It was symmetrical, where i had a lesion on one side, i had one in the same area on the other, and they would go away all by themselves. They became deeper and more painful over the years, sometimes to the point of my entire scalp being affected and very painful. My dr, in my 20s, gave me Diprisone liquid drops to put on them, which contained cortisone, non-greasy, and it actually worked~! For months, i was lesion free on my scalp and then some would re-appear. This was my only sx at the time. In my 30s more sxs appeared and i was misdiagnosed with MS, tho the tx of 3 days of Solu-Medrol 1000 mgs got me out of any flare up, so it worked. In my 40s i got seriously sick, my muscles were shrinking even tho i was very athletic, my vision got worse, and i was in the hospital almost every month, even ICU, from infections that went septic and my entire GI system and immune system failing, and my bladder as well. I finally saw a rheumatologist on my own and he was aghast that my drs had let this disease go untreated, calling it a mixed connective tissue disease, auto immune, and letting it get to every system in my body. I am so happy to finally be getting help as i also developed many more autoimmune problems including secondary Sjogrens that is going on 4 mos now! I am on the max dose of Plaquenil for now and steroids and immunoglobulin IV every 4 weeks thru my port, which helps. But i cant kick this eye thing so im going to ask my dr for iv steroids like my drs in another state did for "MS" sxs. It worked like magic to end any problem. But for the scalp, I would ask your dr for Diprosone DROPS, not the cream, since it is greasy. I also get these ulcerations on other parts of my body as well, but my nose and scalp seem to be the hardest to clear up and hurt the worst, Good luck! I hope your dr listens to you. If not, see a dermatologist, but def. have a rheumatologist if you even think you have lupus! I learned the hard way, even tho im an RN and KNEW i had to have lupus. I trusted my drs and they failed me, and at 49 I cant work or do any of the activities i used to even a year ago. I could have died several times. They had many specialists see me but never a rheumatologist! Im so glad i went on my own. If you dont like the one you see, go to another, preferably in a big city, one that is a teaching facility. Its worth the drive and time.

October 23, 2011 - 7:05pm
EmpowHER Guest
Anonymous (reply to Anonymous)

This is such a common story, about being misdiagnosed and generally blown off by doctors. I dealt with it too. Still do to some degree, but now, I just ignore whatever diagnosis they decide to stick on my or remove like a sticky note. Basically, every autoimmune disease is the same on some level. By that I mean that it's about inflammation, and a deranged immune system that has decided to attack your own tissues. Prednisone always helps in a bind, and there is a world out there full of info that your doctor will not tell you, and probably doesn't know. Rheumatologists have nothing to offer but drugs with serious side effects, so it's not exactly a win to find one who will slap a hard diagnosis on you and write prescriptions for drugs that cause blindness, pneumonia and death. It's a no win situation. The key is to build your immune system back into strength and sensibility. That is not what the drugs on the market do. I'm hearing great things about CBD Oil and other hemp products for autoimmune issues, juicing, allergy elimination diets, and other non drug therapies. I have yet to find anyone cured with pharmaceuticals, and I am in research. I spend hours/day going through medical research and biochemistry files. I veer off into personal health research too, when time permits. The news is not good for traditional medicine when it comes to curing anything.

January 23, 2016 - 2:53pm


This is definitely something you want to talk to your doctor about. Please mention all medications and symptoms that you have just mentioned to us.

Symptoms can be mild or very severe. For some people, only part of the body (eg, skin) is affected. For others, many parts are affected. Though symptoms can be chronic, they can flare up and get better on and off.

Common symptoms:

Swollen and/or painful joints
Skin rashes over areas exposed to sunlight (especially on the nose and cheeks)
Extreme fatigue

Other symptoms may include:

Hair loss
Chest pain, coughing up blood, shortness of breath, difficulty breathing
Kidney inflammation
High blood pressure
Anemia or other blood disorders
Sensitivity to sunlight
Raynaud's phenomenon
Ulcers in nose or mouth
Swollen glands
Inflamed heart, heart vessels, or membrane surrounding the heart
Blood clots




October 14, 2011 - 6:05am
EmpowHER Guest
Anonymous (reply to Rosa Cabrera RN)

Thank you for this advice . I have been to numerous Dr.s they just keep adding meds . I just need to find a Rheumatologist and maybe I could get answers . Thank you.

October 14, 2011 - 10:37am
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